Are YOU Considering Whether or Not to Have Deep Brain Stimulation?
The question: To DBS, or not to DBS?
Shakespeare may have been contemplating graver issues. However, if you or your partner are considering whether or not to have Deep Brain Stimulation for Parkinson's disease, I understand your predicament! I want to hear from you! Why? Because, it sure sounds scary, and I don't have PD! But the love of my life does.
Parkinson’s disease announced its arrival in my house in 2008 when my strong, young, handsome Dan Hott was diagnosed. A father of four, Levi (2), Isaac (3), Violet (8), and Caity (18), our long awaited Hott family was complete. Except for the final addition of a crazy chronic, neuro-degenerative illness that made his left side immobile, drag his leg, freeze his hand at the hip, and my mom think he was perpetually intoxicated.
Over the last ten years, I can’t tell you how many times I have heard someone say, “How’s Dan? You can’t even tell he has Parkinson’s disease! He really looks good!”
I always respond, “Are you kidding me? No! He doesn’t…
…he looks hot!”
Fortunately, a regular regime of levodopa helps. Tweaked daily to account for all that life throws at a dad living on a mountain in West Virginia with Parkinson’s, drugs have managed his symptoms. He appears somewhat ‘normal’ (whatever that means) on the outside.
Parkinson's is progressive
The inside? Well, that's a slowly changing story. Doctors say that “Parkinson’s disease is progressive: It gets worse over time. The primary Parkinson’s disease symptoms – tremors, rigid muscles, slow movement, and balance issues – may be mild at first but will gradually become more intense and debilitating.”
What? Not my Dan! We have plenty of time! Any such incapacitating symptoms were ages away. Well, those “ages” quickly blurred into one quick decade. Before we knew it, Dan was undergoing an exam where he was evaluated entirely off his meds for DBS, or Deep Brain Stimulation, surgery!
Surgical therapy - Deep Brain Stimulation
Soon, we tele-met the surgeon, Dr. Kathryn Halloway from the Richmond VA Hospital. Her image appeared on a monitor as Dan sat in the chair, waking up a camera mounted above. She would drill holes in Dan’s head and insert probes to improve his mobility. We were so excited about the possibilities of life symptom-free! Nearly convinced that a DBS would improve his quality of life, I wanted one too! With just a few details to consider, Nurse Miriam would be calling within a month to schedule surgery for later this spring.
While waiting for Dan’s meds “to kick in” for the next evaluation, Dan asked me, “What do you think I should do?”
On one hand, the notion of being symptom-free makes all the risks involved seem completely easy! On the other, meeting a neurosurgeon via video sure was freaky. They would arrange for us to undergo final evaluations at the hospital prior to his surgery; but, on the whole they indicated that by June, Dan would be walking symptom-free for our family trip to see Hamilton in NYC.
"What should I do?" - YOUR advice!
Now everywhere I turn, I read about risks related to DBS. From loss of speech, bleeding, infection, to memory loss…it scares the hell out of me!
Tell me, if you have Parkinson’s disease and have had DBS surgery, what were the issues that led you to decide either to proceed or to continue with prescription therapy? When you heard your neurologist say, “Your PD symptoms can now be best treated with DBS,” what did YOU do?
We'd love to hear your comments! We need to know, "to DBS or not to DBS?" That is the question.
Which of the following caffeinated beverages do you regularly consume?